ADHD or a type of blindness? Experts say CVI is underdiagnosed and often misdiagnosed

Nineteen-year-old Kyle Butt is a student at the Perkins School for the Blind. Only, he’s not exactly blind. Instead, he is living with a condition known as Cerebral or Cortical Visual Impairment (CVI).

“It’s the leading cause of visual impairment in all developed countries,” said Ilse Willems, senior director of Perkins’ CVI Center. “Whenever we look at anything, the eye will take, essentially, a photograph of what you’re looking at. And then that image gets sent all the way to the back of the brain.”

The brain instantaneously figures out what the eyes are seeing and shoots that information back.

“So all of our recognition comes from the brain, not the eyes,” Willems said.

She explained that students with CVI have some damage to that visual pathway. This means they can see, but they can’t.

In Kyle’s case, that damage occurred when he was about two years old. Born with pediatric epilepsy, he was experiencing up to 100 seizures a day.

“I was given three years to live,” Kyle said.

To prolong his life -- and get the seizures under control -- doctors performed a drastic surgery called a partial hemispherectomy -- in which they removed seizure-producing tissue in Kyle’s brain -- a lot of tissue.

“I had 42% of my brain taken out,” Kyle said. “When my parents were told this surgery was going to happen, doctors didn’t know what kind of effects it would give me. The doctors didn’t know if I was going to walk or talk ever again.”

Kyle can both walk and talk -- too much sometimes, his parents say -- but was left with a loss of peripheral vision and CVI. He’s also forgetful -- to an extreme: anything out of Kyle’s sight is truly out of his mind -- such as homework assignments. At Perkins, he learned to keep a planner, which he checks frequently for homework he would otherwise forget. Teachers have also created a learning environment that plays to Kyle’s strengths -- such as voice recognition -- something crucial for his well-being.

“Looking at somebody’s face, over and over again, doesn’t imprint on you,” he said. I’ve been with my parents for 19 years and I still sometimes don’t recognize their faces.”

Kyle wasn’t diagnosed with CVI until he was sixteen years old. Before that, he spent many difficult days trying to make it through public school.

“It was very frustrating,” he said.

Late diagnoses are not uncommon.

“You could have CVI and just perfect vision,” Willems said. “Currently, there’s no clear, easy way to test and say, yes, this student definitely has CVI. It’s all about looking at their visual behaviors, what they’re showing you.”

Making diagnosis even more difficult is the fact that not all CVI cases look the same. Misdiagnosis -- confusing CVI with ADHD, for example -- is common, according to a recent study Perkins participated in.

“It showed less than 20% of those with CVI in the United States have a diagnosis,” Willems said. “And that diagnosis leads to getting a really thorough assessment and the right supports, and resources they need to access their world.”

And if they don’t get a diagnosis?

“It means frustration above everything else,” Willems said. “They’re working so hard to recognize and make meaning -- to make sense of anything they’re looking at.”

What Kyle is looking at is an opportunity to further his education. He’s getting ready to take his first college course -- English Composition -- at MassBay Community College.

Kyle’s ultimate goal is to become a meteorologist.

“My favorite types of weather are blizzards and hurricanes,” he said. “Actually, one of my dreams is to be hit by a Category 5. I don’t want death, but I want the pure beauty and power of it. The fury.”

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